Can You Die From MS?

Most things I read say that you can't die from MS. I know people with MS and they are really sick. If they don't die from MS, what do they die from?

What can you do along with taking one of the medicines they have for MS?

REPLY:

Hi Amy,

You are correct, MS is not normally a direct cause of death. Not to frighten you, however, but deaths from complications of multiple sclerosis can and do happen. This subject is one that many, once faced with a diagnosis like MS, wonder about, especially when going through a severe exacerbation. You, as an MSer, may be reluctant to talk about it, but it's always in the back of your mind.

As an MS caregiver, I have thought about losing my husband to something like a severe infection, or a bad fall. When depression was a problem for him, I worried about his state of mind. I know of one MSer who is constantly choking because of swallowing problems.

If we look at all of the things that could possibly go wrong when you have MS, the complications from some of the symptoms, the number of possible ways to die adds up. The facts that we know about multiple sclerosis still say that most people with MS will never reach a stage where severe disability occurs.

The average life expectancy of an MSer is only slightly lower than for the general population. You, as an MSer, depending on how old you are, the treatment you are using, and whether it is working to slow down progression, may live as long as you would have without MS.

Or you could succumb to one of the things I mentioned before. If the average numbers for deaths in people with MS don't include deaths from falls, infections, suicides, or something else, then the percentages may be off. A report may list someone with MS as having died from blunt trauma to the head, which could have occurred from a bad fall (the result of balance problems). MS may not even be mentioned because it was not the cause of death.

While this subject is not a pleasant one for MSers to dwell on, it is something that no doubt will cross your mind from time to time, (possibly more often than that). So what can you do about it? Knowing the potential causes of death by MS complications, you can try to avoid as many of them as possible.

When we found out that infections could cause the death of someone with MS and that Cir is prone to infections because he self-caths, we became extra cautious. I wipe down the sink and toilet whenever I use the bathroom so that it is cleaner than normal when he uses it. He also is extremely careful about the steps he takes when he is preparing to self-cath.

He drinks plenty of water to flush his bladder and self-caths at regular intervals so that his bladder doesn't get too full and back up into his kidneys causing a kidney infection. If he gets sick with any other type of infection, we have to make sure that he stays hydrated. He ended up in the ER once when he had a fever and had forgotten to keep drinking fluids because he was so sick.

Neither of us caught on until he was delirious with a high fever and losing fluids rapidly because he was sweating profusely. When I couldn't get him to make sense, I had to call the EMT. Because I couldn't move him alone to take him to the hospital, they took him in an ambulance. When he got there, he ended up with a foley (indwelling catheter) for a few days and an IV to rehydrate him.

Since then, we've learned to keep him hydrated especially when he is sick or feverish. Once the dehydration ball gets rolling, it's very difficult to stop it without intervention. We both try to keep an eye on anything that could lead to and cause a possible infection.

With that said, there are still many other things that can happen. He's very careful about not falling. He always uses a cane, walker, rollator, or wheelchair, depending on how he feels. When moving about the house, he tries to be mindful of where and how he takes his next step. He tries to plan out where he's going, look at what's around him before moving. This carefulness makes everything he does take that much longer, but he doesn't fall very often.

Ask yourself, what can you do to stay as healthy as you possibly can? What steps can you take to be as safe as you can? If you are depressed, have you talked to your doctor about it? Even being as healthy as you can or as safe as you can, doesn't mean you'll never have an exacerbation that may land you in the hospital. MS is like that.

You can only do so much. Sitting around worrying about how you may die is not healthy by any stretch of the imagination. Learning to live with MS and living life as best you can is what you should try to do.

Death is something that everyone must eventually face whether you have MS or not. But how we live is what matters most. Those who don't have MS will never know exactly what it's like to live with the disease. Not even those closest to you. That is something you, as an MSer, have to come to terms with.

It doesn't mean that you have to try and be the life of the party or a "Positive Polly". But the opposite extreme is not good either.

Akrista

Comments for Can You Die From MS?

My brother just died 5 days ago. He was 59, diagnosed only 6 years ago. He had the progressive type of MS and had been bed bound for 3 years. He got pancreatitis which may have been caused by the Copaxone that he was taking for MS.

This infection, plus a pneumonia, took his life. What happens is that when you have the very progressive type, your body just can't fight infection and your organs don't respond as they should. It was unfortunate that my brother and sister-in-law, who was his caregiver, never allowed visits from others in their home.

My brother was isolated from others either by personal choice, maybe shame, but also because of his wife who feared a visit from others would cause stress and an exacerbation of his symptoms. Please don't isolate yourself if you have MS because family and friends want to see you.

I regret having "lost" my brother a long time ago because of his refusal to see people. Please make sure your organs are medically followed to ensure that your medicine for MS isn't destroying a vital organ. Take care of yourselves, don't live in denial, and accept the love of friends and family.

Your life will be more fulfilled. I wish it had been different for my brother. There is no shame to needing others to get around. Give others the joy of giving to you. May God Bless all of you who have MS and who are caregivers.

Jun 05, 2012

Thanks for Sharingby: Akrista

Thanks so much for sharing your story. I'm sad to hear about your brother dying the way he did. Your loss is sad because in a way, you "lost" him years before when you were deprived of being able to spend time with him when he needed you most.

Even though he may have requested that no one be allowed to visit, these visits may have helped him deal with the isolation, and no doubt, depression, that came along with all the other symptoms associated with his MS.

Your willingness to share your story may help others to remember that MS is not the sum total of their lives. Other things can go wrong as well. Do not assume that everything is your MS.

Take care and thanks again,

Akrista

Jul 02, 2012

Living in fearby: Elezabeth

I too am on my way to being diagnosed with MS. All that is left to do to finalize this dx is the spinal tap. (I had the MRI that showed active lesions in the white matter, along with s/s that go with MS, including optic neuritis which was what started the testing to begin with.)

I have held off on it for a while now, partly because I feel better "not knowing" for sure.. denial I guess. It's so scary. Some of my family and friends know about the situation. Most of the ones who know the severity of it were heart broken, therefore I stay away from bringing it up to them. And the rest have no idea what MS is capable of so they just kind of blow it off, which is fine.

But honestly I'm dying to talk to someone about it. It hasn't really hit me yet, just a little at a time. My vision in my left eye is horrible, which was what began the suspicion of MS to begin with. I had no idea it was a possibility to be an underlying result from something like this. I thought maybe it was a ripped contact? Or even a contact that was too old?

I've been trying not to think about it, but here lately it's been getting to me. My balance is slightly off. I have the numbness and tingliness at times. And I know it's not good for anyone to dwell on the worst, but I can't help but think about how I'd HATE to have to rely on someone to take care of me? Or how I don't want my friends and family to watch me go down hill...

Jul 18, 2012

lets bs about msby: nicole

I can so relate to you Elezabeth. I was diagnosed a year ago and I am still in denial. It's been very hard to accept. When there's "good" days you pray there won't be a bad day too soon.

It's very important to talk to others about it. I haven't been able to master that as of yet. People who dont have it don't understand. I go through so many ups and downs mentally and physically.

Sometimes when I get up I fall down, lol. I even put signs at the bottom of stair case that say...stairs may appear closer or further away than they actually are....lol...I am still struggling...but I kmow that there are others who are struggling as well and I dont feel so alone.

I have also decided not to take any MS meds. I have 3 children who need me. The meds had me in bed 3-4 days a week. I feel much better now but am def scared. I,m hoping for new med to be available soon bg12. Keep your fingers crossed!...

Hope all have a happy and healthy day!

Dec 24, 2012

HIby: Lisa

Hi all you are all so brave. I am scared to death. I was dx with lupus cerebritis 12 years ago and went through chemo. My rheumotologist sent me to a neurologist a week ago because my symptoms have returned and gotten worse. The neuro seems pretty positive that I have MS. I am just beginning all of the testing and repeated MRIs now. I am a nurse so I know the road ahead.

Feb 17, 2013

Knowing about MSby: Anonymous

Hi Lisa,Unfortunately, when you are in a position that deals with conditions like MS, and than you develop it yourself, the road ahead can seem like a nightmare waiting to happen.

I am so sorry that you have MS. Is this along with the Lupus, or instead of. Someone posted recently that those with one autoimmune disease are more likely to contract other autoimmune diseases. Hopefully that's not the case too often.

Take care and hope that your MS is a milder type.

Apr 09, 2013

Y'all Braveby: Anonymous

I was diagnosed in 2011. I was a soldier in the Army serving a tour in Afghanistan when I was having trouble walking. I couldn't keep up with my team when we went out on patrols. I had no idea what was going on with me, I thought it was my back because I had severe pain in my lower back.

When I got to Germany the doctor asked me to stand up and when I did he stopped me and asked how long I had been standing up like that. I said "ever since my back has been hurting". He immediately started doing tests on my eyes and making me walk up and down the halls. He said I was showing signs of neurological distress.

Ordered an MRI and his suspicions were confirmed. He sent me home and my Military career was over. I was scared and angry and depressed, but now I've been symptom free since 2011. I just want to let everyone know that it will get better and staying positive will really help.

Sep 11, 2013

MS and livingby: Anonymous

I was told that I had MS 7 years ago, with it being primary progressive and was told to be ready to be in a wheel chair with in the next 5 years.I was too bull headed to take that as gossypol but after 4 years of tweaking my meds I went from not being able to walk 4 out of 7 days to being back fishing, it has taken a lot of time and the will to never give in to it, but now I am even able to get back behind the wheel of my car.I still am in pain 24 hours a day 7 days a week but I have learned to block most of it and just got on with my life as best as I can.I'm not saying it is the same for everyone or even to do what I have done, I still tend to push my self hard at least once per month to see what I can and can't do any more.The hardest part was having to give up work and seeing my wife work hard to cover the income we lost.If I can give any hope to anyone with MS it's to find something you love doing and find a way to keep doing it, after all life is for living.